Alzheimer’s Association Trajectory Model labeled irresponsible again

We have reported on the blog earlier that the Alzheimer’s Association Changing Trajectory report imagines that a magic bullet will appear by 2015 and that the report projects cost savings by the drug being free and universally available. The local chapter in Cleveland will be featuring the report at their annual meeting on June 16th. See here my published letter and below it their article in The Plain Dealer about the report.

Alzheimer’s Association’s formulas for cognitive aging not so simple: Letter to the Editor

Regarding the May 24 Forum op-ed, “Doctors who fail to disclose Alzheimer’s diagnoses a national shame,” I wish the formulas for cognitive aging as suggested by the Alzheimer’s Association were so simple. No diagnosis = doctor’s shame; diagnosis = patient dignity. And how about their big formula: more research money = found cure + reduced caring + saved health care system.? Alzheimer’s and early forms of dementia like Mild Cognitive Impairment are all imprecise labels that can cause great harm to individuals and society. Everyone should prepare for possible cognitive decline.

Current drugs do not slow progression, so-called “advanced technologies” for diagnosis are expensive and unproven, and multiple clinical trial failures attest to the problems with current scientific understanding. So-called Alzheimer’s is really Alzheimer’s (plural), i.e. multiple conditions that are related to aging. In a recent report (Changing Trajectories: How a Treatment by 2025 Saves Lives and Dollars) the Alzheimer’s Association irresponsibly imagines a major breakthrough (sometimes called a cure, whatever that looks like) by 2025 and models its cost as zero. This is truly a magic bullet – powerful and free (tell that to the drug companies). We need true magic – new and more responsible stories of brain aging that involve public health, public education and inter-generational perspectives.

Peter Whitehouse,

Shaker Heights

Doctors who fail to disclose Alzheimer’s diagnoses a national shame: Matthew Wayne and Christine Nelson (Opinion)

Dr. Matthew S. Wayne is a member and past chair of the Professional Advisory BoardMatthew S. Wayne

You have heard the statistics: 5.3 million Americans have Alzheimer’s disease and the number is expected to more than triple to 16 million by 2050. It is the sixth-leading cause of death in the United States and has no cure.

The cost of care and burden are overwhelming. In 2014, Americans provided nearly 18 billion hours of unpaid care to people with Alzheimer’s disease and other forms of dementia. Total payments for health care, long-term care and hospice are estimated to be $226 billion in 2015 for people with Alzheimer’s disease and other forms of dementia.

The recently released 2015 Alzheimer’s Disease Facts & Figures Report provides some staggering statistics, too. A special report highlighted that fewer than 50 percent of people with Alzheimer’s disease and 27 percent with other forms of dementia were told their diagnoses. Compare this to the fact that 93 percent of those with breast, colorectal, lung and prostate cancer are told their diagnoses.

Christine Nelson is chair of the Alzheimer’s Association Cleveland Area Chapter’s Professional Advisory BoardChristine Nelson

There is widespread agreement among health care professionals that people should be told their diagnoses. According to the Alzheimer’s Association, telling the person with Alzheimer’s the truth about the diagnosis should be standard practice. Disclosure should be delivered with sensitivity and in a supportive manner that avoids unnecessary distress. Telling the truth about the diagnosis allows the person with Alzheimer’s to maximize quality of life and play an active role with the family in planning for the future.

As members of the Professional Advisory Board of the Cleveland Area Chapter of the Alzheimer’s Association, we believe individuals and families want and deserve the best possible care. Diagnosis and treatment should be looked at as a partnership with your physician, and we offer these important suggestions:

Remember that significant memory loss is not a normal part of aging. If you or someone you love have concerns about memory loss or thinking problems, we urge you to talk openly and honestly with your doctor.

Make the most of your doctor appointment, and plan ahead with written questions and specific concerns. Do not bring them up at the end of your appointment or casually mention it while discussing other concerns or health issues. This is important!

Knowledge is power. People affected by memory loss and their caregivers are often aware that something is not right. Knowing the diagnosis can help you understand the symptoms you have felt or observed. For caregivers, knowledge of the diagnosis and disease characteristics can help you better appreciate your loved one’s remaining capacities, ease frustration and increase empathy.

With advanced technology, imaging and careful history taking, we are able to diagnose Alzheimer’s disease and other causes of dementia better than we have in the past. Defining the diagnosis is critical because there may be reversible and treatable causes of memory changes. Understanding why something is happening allows for proper supports and planning to be put in place. Initiation of treatments and supports may help to slow the progression of the disease and improve quality of life. Knowing a diagnosis is critical for individuals to prepare and plan for the future.

Locally, the Cleveland Area Chapter of the Alzheimer’s Association provides effective caregiver support through several programs based on rigorous research. These programs help assure that persons with dementia get high-quality care for the disease and its symptoms, and help caregivers effectively cope with caretaking responsibilities and related stresses and strains that can result.

We strongly urge all health care professionals to give their patients the dignity of a disclosure. And to encourage those newly diagnosed to turn to the Alzheimer’s Association for the care and support they will need to navigate the challenges of dementia as successfully as possible.

Other members of the Professional Advisory Board, Cleveland Area Chapter, Alzheimer’s Association, concurring in this op-ed are:

Christine Nelson is chair of the Alzheimer’s Association Cleveland Area Chapter’s Professional Advisory Board. She is the coordinator of the Lakewood Hospital Senior Care Assessment Center. Dr. Matthew S. Wayne is a member and past chair of the Professional Advisory Board and former member of the chapter’s Board of Trustees. He is the chief medical officer of CommuniCare Health Services.

Peter J. Whitehouse, MD, PhD is Professor of Neurology and former Professor of Psychiatry, Neuroscience, Psychology, Nursing, Organizational Behavior, Cognitive Science, Bioethics and History. He is an intergenerative, narrative-focused evolutionary physician and health coach. His main passion is developing innovative learning environments (such as The Intergenerational School) to promote collective wisdom and contribute to individual, community, and planetary health.

Comments

Dear Peter in America,
This is Peter in Scotland. I fully support your published letter. What you say is important for us all as we get older. The “shame” is surely with those, who for many understandable reasons, choose to simplify and reduce so much to “Alzheimers” as a unitary concept free of biological ageing.

In Scotland, Professor June Andrews, a robust advocate for early diagnosis, has gone even further than your Alzheimer Association. Professor June Andrews, of the Dementia Services Development Centre, published that “GPs [family doctors] should be sued [taken to court] if they do not make the earliest possibel diagnosis”.